Life after Traumatic Brain Injury

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Disclaimer: This is MY personal journey, I’m in no way suggesting that what works for me will work for you. My hope is that it will get you thinking about things you may not have considered. Also, this is NOT to replace any medical treatment you are or will be receiving, please continue with any medications and therapies you are currently undertaking. Everything I did was AS WELL AS my neurology, GP and Psychology appointments. If you are going to spend your hard saved money on a treatment please ensure it is something long lasting that you can integrate, anything that claims to be an instant cure may not be all it seems.

“Religion is for those who don’t want to go to hell, and spirituality is for those who have already been there.”
― Elizabeth Gilbert, Eat, Pray, Love

I was searching on the net to find an appropriate segue into this post and I happened upon the above quote, it made me laugh so I thought I’d use it. It’s kind of correct, it’s only after going through rough times that you seem to start to grow. (Re)Birth is hard and painful but like the caterpillar working hard to push out of the cocoon, the butterfly that emerges with its colour and freedom is worth it.

This is perhaps the most challenging of the trilogy of posts I’ve had to write, the reason being is that this is the VERY personal private things I have tried. I struggled a little with the idea of sharing it initially for reasons I will explain. Firstly, this is the really profound inner exploring I have done and still do on myself to make changes, it has challenged me on many levels. Secondly, it’s not scientific and if you present anything ‘non scientific’ a lot of people balk at the idea and write you off as having no idea about anything and that you’re probably a bit daft. This is the part of healing me and my friend Diana refer to as the “woo woo” stuff. Don’t knock it til you’ve tried it I say!

So let me say I’m presenting this as it is to me. I can’t verify things with percentages and numbers but I can say hand on heart that everything here WORKED for me and to be perfectly honest, that’s more than good enough for me. I am a level headed person with a lot of curiosity about the world, I don’t take things at face value and I’m certainly aware of the arguments for and against alternative therapies/healing/woolly thinking/whatever. The healing that has happened, well it could be placebo, which a lot of people will think, but on a fundamental, soul deep level I have changed because of what has happened and because these following treatments and self healing have enabled me to expand around my trauma. Again, none of these are quick fixes, they take practice and time and in that way they are just as valid as anything else I’ve done. There’s no miracle cure on offer here.

I see spirituality not as religious dogma but a practice, a way of being with yourself and the world. I’ve been opened up to the authenticity and power of self and for that you don’t need no deity!

A single trauma doesn’t exist in isolation, my brain injury unsettled the dust that had lain dormant over all the other traumas in my life so there is a lot to work through. Bear this is mind when reading as it’s very multi layered and deep the way all this works.

My inner voice is telling me that ‘who cares what anyone else thinks, just get on with it!’ Ha! So I’m going to do just that.

1) Candle time

This one doesn’t require a massive leap into the twilight zone. It’s a very simple practice that was suggested to me by my Counsellor many moons ago. It came into usage when my grief was overwhelming, when I was crying constantly and didn’t want to go on. The idea was to set aside some time each day to sit by myself with the curtains closed and light a candle. What I did then was focus on the candle and tell it all my worries. I poured out my sadness, my frustration, my loneliness and my fear and I cried and cried and cried. Once I’d purged, I thanked myself and the flame and then blew it out. I did this everyday, sometimes it lasted 10 minutes sometimes an hour. Every day I worked through the sludge, it was tiring but it helped.

Once I’d become less raw, candle time then morphed into ‘worry time’, the same thing but it was my window in the day where I allowed myself to fret and worry at a specific time each day. Once it was over no more worry was allowed that day. It compartmentalised my anxious thinking into a time slot and allowed me to see that really that’s all it was, just thinking, nothing serious.

Candle time still gets used by me but not as often as it used to but it is incredibly soothing and cathartic. Never feel ashamed or apologise for the emotions experienced during candle time they are all there for a reason and to feel them instead of suppressing is very healthy.

2) Soul retrieval

This was to be honest, one of the most beautiful things I have experienced since my injury and it came about totally by chance. I was surfing the net, filling the void like I always did and I came across articles on Shamanism. I find anything like this interesting so I carried on reading and found out about something called soul retrieval.

In a nutshell, the Shamans believe that every time we experience trauma a part of our soul ‘breaks’ off and gets lost. Shamanic retrieval is there to help you find it again. It really appealed to the side of me that loves all that kind of stuff so I thought ‘heck, why not? Even if it doesn’t do anything I’ll be no worse off, I’m already lying in bed all the time’. So purely by gut I found a Yorkshire lady who did this kind of thing long distance (a lot of all these spiritual adventures were done by ‘gut’ instinct, don’t ever write it off let me tell you!). We spoke on the phone, she went and did her thing then called me back and told me what she found. I don’t want to go into too much detail here as its private but she was totally spot on about my inner self, the bit I don’t show people and returned a bit of myself to me. Soul retrieval is full of beautiful symbolism and story and quite frankly, blew my tiny mind. I felt immeasurably better after the treatment and it maintained, it’s not something that peaked then disappeared. It was a catalyst for the improvements that followed.

3) Divine consciousness Activation

I don’t even know where to begin explaining this so I’ll just say it’s about pushing aside ego and connecting to higher self. It’s like Mindfulness and The Power of Now but with a WiFi connection!

It’s about looking at your self talk and the language you use. We label emotions as ‘bad’ or ‘good’ and this can add to the shame and guilt and suffering we attach to them. Sadness isn’t bad, it’s just sadness, happiness isn’t good, it’s just happiness.
When you begin to get this concept it’s easier to allow them all. It’s about feeling feelings, it’s about letting go, it’s about getting on with regardless of ‘feeling’, it’s about being happy with ‘now’ and not some future event. It’s just about being.

Argh! I’m not explaining this very well but speak to Rebecca on her website she’ll set you right. She always says to me “you don’t need fixing, you are not broken” and I’m starting to believe her!

This is so intrinsic to my life now that I can’t imagine a time when it wasn’t around. It doesn’t claim to stop challenging things happening to you, what it does do is change the way you attach to it so you no longer suffer. Again, I have to challenge myself with this as I can slip back into my ‘humanness’, my desire to ‘fix’ with logic and rumination. I am not joking when I say this changed my life because it changed the way I think.

4) Paganism/Nature

My friend Diana and I who I talk to a lot about Brain injury and its subsequent joy have both admitted to a feeling since our injuries of being ‘switched on’. It’s a strange, vague feeling that is, on researching, fairly common amongst brain injury survivors. It’s like your router gets a knock and the download speed is superior (to continue the WiFi metaphor). I’ve always been a nature lover but something unwound in me and I began to feel more rooted into the earth. I was picking up feelings, emotions from others and from rooms in buildings and plants and animals. Haha I KNOW this sounds bonkers, I really do, but it’s what happened.

I began to read more into paganism (again it’s not really a religion for me but a practice). As a result I’m more in tune with the wheel of the year, the moon phases and the passing of seasons and it’s a wonderful thing. It’s an activity that gives me focus and makes me feel complete. I’m not really sure I self define as Pagan but it’s the closest thing to tree hugger/yogurt weaver/hippy/witch/wise woman/folk magician I can find. Seriously though getting out into nature is one of my greatest pleasures, it’s soothing and healing and really brings you into the moment.

5) Music

I wrote about music here. Music is a healing source. It can enable the release of an emotion that may be a bit stuck. It can carry you away somewhere lovely and it apparently works on parts of the brain that need a boost (highly scientific lingo for you there).

6) Reading soul books

There’s a lot of books out there that are labelled ‘self help’ and some of them are dreadful, if you sift through the dirt though you find some diamonds. I tend to focus on ones that are about the power of the self and how you are capable and in charge of your own healing. I’ve realised, albeit painfully, that if I want to heal then it’s up to me. I can get help and support but ultimately I have to follow through with it. This is not a lesson everyone can hear and if it doesn’t work for you right now, fair enough. I didn’t want to hear it for a long time. Soulshaping by Jeff Brown, The Power of Now by Eckhart Tolle and Dark nights of the soul by Thomas Moore should get you started.

7) Groovy Bruce/ animals

As with nature, I find animals very healing. They are very present and spending time with them makes you very present too. I haven’t mentioned him on the blog yet but our lovely Groovy Bruce the bunny taught me a lot about myself. The way he interacts with us humans especially when we first got him was very parallel to my own experience with anxiety and the world. He was very shy at first and we had to be patient and slowly build trust. He was a metaphor in furry form about how I was experiencing things at that point. He was initially got as a therapy pet, something I HAD to get out of bed for, to look after this wee delicate creature. He now continues to be a source of joy and connection to the present moment

8) Sound therapy

Finally and this is a relatively new one for me. Sound therapy. Just as music helps you connect as mentioned above, then Sound Therapy I suppose works on that same basic principle. Issues and trauma vibrate at a frequency that can be rooted out by sound. I went into this treatment with no expectations and what happened was very powerful.

After one treatment with Penny, which involved lying down and relaxing whilst she played sounds from different instruments around me. I released a huge build up of trauma (there is a theory I’ve mentioned in a previous post that trauma gets trapped in the body). It was quite overwhelming and I will admit, a little scary. There was a little healing crisis I worked through afterwards (this is a good thing, it’s a clearing out of stuff) but the next day I was on top of the world. Energised, joyful and content. I need to book another session with Penny but because it’s tiring I have to time it with an upswing in my fatigue levels or to make sure I do it at a time when I can afford the time and space off afterwards to integrate the healing.

You can find out more and book with Penny here shanokee.music@gmail.com she’s based in Belfast and wonderful.

That’s it! I’m done! Business as usual again from now on, I’m hoping to start getting the old Paint out and doing more illustrations. I sincerely hope this trilogy of posts has helped you in some way even if it’s just to set you off investigating something. I feel I must reiterate, I am not telling you what to do with any of this, I’m letting you know what worked for me, that there’s a myriad of things out there you may not have considered. If you think it’s baloney I really don’t mind!

In this ever changing journey with brain injury I have read many books, blogs and websites, I have attended lots of appointments and given myself lots of ‘good talkings to’. Some things have worked, some haven’t, the ones that have been useful can be found in the links section but today I want to write about something I have started doing that resonates with me completely in the hope that it will inspire you in some way to give something a go.

As part of my reintegration into the big wide world and exercise and other people I had been searching for groups to join, ones that would be small and stress free but that would enable me to start burrowing out of my cocoon. Using my friend Dr Google I searched my local area and found some groups that would meet some of my needs but were either too late at night, too challenging physically or just too scary looking!

Then like the brain injury recovery fairies were listening to me, I stumbled by chance upon a twitter account (@Belfastwalks) who seemed to offer exactly what I needed. It’s an initiative by Belfast Council and Groundworks NI to get people out and moving but the added bonus is that it is incorporating Mindfulness into the walks. It’s going to be a year long programme and so far the walks have been at a good time of day for me.

It’s strange at first because you turn up and there’s lots of lovely new exciting people to meet but the walks are conducted in silence (there’s an opportunity before and after to chat). The point of Mindfulness is to be in the moment, to caress the earth with your feet and to try to let go of all that nonsense that clutters up your head normally.

We must look weird to others who spot us walking in a raggle taggle group, in silence and wandering off into the grass and flowers but believe me it is the most refreshing and beautiful part of my week.

I notice how fast my mind races with rubbish, how things that pop in there don’t actually matter that much, but more importantly I don’t just dash through nature without seeing the different shades of green, the sound of the river babbling by, the dogs running joyfully through meadows and I get to watch a bee jump from flower to flower. There is no pressure to move on, to get things done and it’s wonderful.

Ive done a couple of these walks so far and the people are lovely, the nature is amazing and I confess I have shed tears on both of them (thank goodness for sunglasses!). Not because I’m sad but because there’s a real sense of coming back to yourself and because you see that the world around you is actually rather bloomin’ gorgeous.

I like to sometimes mention these things that help me reorientate because they are so valuable to my peace of mind. So if you’re Belfast based please consider trying this out and if you aren’t lucky enough to have a Mindfulness walking group near you, start one! Or just get your shoes on and wander around yourself, in silence, embracing the earth and letting your thoughts just pass on through.

It’s been a few weeks since the dizzy heights of my 12 month anniversary of TBI. I was very hopeful and going through some ‘good days’. With TBI you measure time in days. Not weeks or months. You don’t look ahead too far, you have to stay in the here and now. This is both good and bad. It’s good because living in the now is exactly where you want to be, it’s mindful and what I strive for with meditation. It’s bad because it’s hard to do and it’s only sometimes used as a form of protection. ‘Good days’ can turn into ‘bad days’ a mere 24 hours apart. I’ve mentioned in previous posts about the frustrating nature of TBI recovery and it’s back and forth nature so I won’t labour the point here but let’s just say there’s been a few ‘bad days’ since my last post.

I want to talk to you today about the particular breed of anxiety that manifests itself for me. I sometimes have the generic ‘everything is out to get me’ anxiety, though to be fair this is becoming much much less of an issue these days. The other type I have is quite funny really, I have to laugh at myself because I know how ridiculous it is when I get it.

The TBI has gifted me with health anxiety, now don’t get me wrong, it’s not constant and only flares up when I’m low generally or haven’t slept properly for a while. The thing with health anxiety is any tingle, zap or flutter anywhere in my body sets me off on an Internet quest to find just ‘what exactly is wrong with me’. Now you can see where this is leading, I end up convinced that I have TB, Beri Beri, my legs are going to drop off or some such nonsense. The Internet you see is a wonderful tool for knowledge and connection and understanding the world BUT it is also a place for quackery, misinformation and convincing a very bored Braingirl that I have EVERYTHING EVER.

To combat such silliness and general malaise and crappery I am trying to gain control of my thoughts and feelings. Instead of letting them run away with themselves and tell me all sorts of dark horrible nonsense I want to lighten my load and make life a little easier for myself.